So I have just had telephone consultation with my Rheumy. I am upset. 2 years on steroids, I should apparently be off them by now, all the steroids aren’t good spiel. Why aren’t you on bone strengthening meds( discussed at last appt). I have just tapered to 6.5 . It was agreed that I stay on for two moths before dropping dose.
Blood are good though. So I said what do I do when I have groin pain, can’t lift my legs, get upstairs etc going on for a month.
I came off the phone feeling it was my fault for not getting better..
Thank you for listening.
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Alazarin
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Oh dear another Rheumy who isn't aware of info that confirms PMR lasts longer than 2 years, and that Pred is not the evil drug some seem to think it is.
At least he didn't push you to reduce - small victory!
Thank you for your reply Dorset L. They are arranging an X-ray of my pelvis. My own theory is that it is extra cranial GCA. As discussed in a paper you posted. But what do I know.
I`m beginning to think they are all in the same mood!...what is it with these rude Rheumies!.....
I have just had a letter from the N&N hospital to say...no appointments available, hope to see you within 18 weeks!....so have no is idea what mood he will be in!.......
Yes mine was upset that I’d upped the Pred briefly because of a flare up : felt it necessary to recount the evils of Pred: I don’t want to be on them ! Hugs 🤗
Oh yes, that brings back memories of coming home from Clinic feeling weepy because I’ve had to stand my ground hand being made to feel it was my fault I was even on Pred. It’s just horrible feeling one has to be ready with current research at one’s fingertips like one is in court defending oneself.
I don’t see a rheumatologist and my doctors are great. They let me do what I want with my dose as they know I am sensible with it. Doing a slow taper from 4.5mg to 4mg at moment after 3 + years and all going well
I think I am at the same stage as you, 3 years + and currently slow tapering from 5-4mg with no probs so far. I see a rhuemy privately, having said that havent seen him since November last year as consultations cancelled because of Covid. However have had several emails from him after having blood tests (all on NHS) My gp did ring me querying repeat prescriptions for Pred and Leflumonide but when I told him at Dr. S was looking after me, he said, "hes the expert leave it to him" . Am now booked to see him in November.
Puts me in mind of when a teen. Told my Mom going to spend the night at a friends, she told her Mom same and we’d stay out all night. Tell Rheumi GP has it covered and GP rheumie has it covered then do what’s best for us. (Mind staying out all night probably wasn’t best, but at least I knew all the tricks so my kids couldn’t get away with it!)
Thanks for your support everyone, it really helps, my GPs are great, and they have often advised ‘go up’ if I am in pain and don’t want me to suffer. I think Rheumy doesn’t like this. Now wants me to call them if I need advice.
Maybe time to sit down with your GPs and discuss where you go from here? Like, maybe not back to that particular rheumy?
I was discussing duration with my rheumy last week - one whose name is all over publications about PMR and GCA. He isn't in the least surprised that there is a sizable group of us on the forum who are into double figures with years of PMR. I am unusual he says in the level of dose I require but he accepts there are a lot of us who have PMR for a long time. Your rheumy is out of date - badly so.
I'm so sorry you were made to feel that it's your fault for not getting better. We would all like to be off steroids in two years but we know that there isn't a time limit for PMR/GCA. It seems that your rheumy is not as knowledgable as he could be and is on the defensive. I hope you get get answers soon.
What was his answer to your pain . I had the same problems with Rhuemie this week, although he didn't speak directly to me , in fact didn't involve me in the consultation . I put a post on here.
This seems to happen a lot so you’re not on your own and it is upsetting. It’s unfortunate we feel vulnerable enough as it is without a dictatorial Rheumie. Wish they would get it that how they behave is such a stress to patients and we all know what that does.
It’s good you have a listening GP and I would have a conversation with him/her.
In the meantime remember it’s not your fault, you’re doing what’s right for you.
I had exactly the same with mine again too. Got down to 6mg and had a GCA flare back to 40mg at GPs advice didn’t work so back to 60mg absolutely gutted! Then GP wrote to Rheumy who said reduce ASAP Trying to reduce but can’t get past 40mg. GP wrote to Rheumy who phoned me out of the blue and again argued that she doesn’t even think I have GCA. She tried to say it was TGN which I quickly dismissed by telling her I had paid to see a Neurologist privately and paid for an MRI which I couldn’t afford to rule this out as I knew it wasn’t TGN. But with normal bloods all the way through so hard to convince them. I stood my ground easier on the phone she’s sent me a nappy in 2 weeks and improvement on last time as it took 4 months. Not looking forward to it. Even my husband said she is horrible and 3 of my GPS have said other patients have said they do not like seeing her. I know exactly how you feel I was starting to get my life back I’ve just had my first grandchild does she think I want to have Moo face, diabetes and high blood pressure because of the massive dose of steroids I’m on because I certainly don’t but can’t function without them! Good luck you are not alone in this x
I had the same damn experience on my first visit to a rheumy after a couple of years ago! I've been back to her a couple of times and things haven't got much better. Whenever I get back to Canada (still locked down in Panama) I intend telling my GP I'm not interested in seeing her again, hoping he will understand. Like many on this forum we have learned to manage our condition based on the extensive knowledge and advice available here, knowledge which appears to be far greater than too many of the so called specialists!!
I feel your pain!! My rheumy does not believe I have GCA because my inflammation indicators are just above normal, scans are fine (apart from significant cervical facet joint arthritis) and I refused to have a biopsy as it would have meant booting some other poor sole off the emergency operation list (it was during lockdown), something I was not prepared to do. He was quite dictatorial and said he wanted me down to 5mg by my next appointment in November. That is not going to happen as when I went from 15mg to 12.5mg I had a visual disturbance and my eyesight deteriorated until I went back up to 15mg. My GP said I should call the Rheumy department but was given the run around and never spoke to a doctor. GP has advised me to go slowly and is of the opinion that I have occult GCA. Going to enlighten rheumy about the attitude of his administrator at next appointment.
I would not mind but the dictatorial Rheumy is head of department so you can see where the attitude of his department members comes from.
As we all know you can always get support and advice here.
There seems to be a conflict between GP guidance( who know you better) and specialist lead treatment, in my opinion. My GP will always say let’s look at the symptoms not just bloods. Specialist other way round, bloods ok, keep coming down whatever😐
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